Multiple Myeloma Archives

Plasma cells are cells in the immune system that make antibodies, which help the body fight infection and disease. Multiple myeloma cells are abnormal plasma cells (a type of white blood cell) that build up in the bone marrow and form tumors in many bones of the body.

More resources for Multiple Myeloma from Patient Empowerment Network.

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

How can you best care for a loved one who is undergoing bispecific antibody therapy? Dr. Craig Cole, a myeloma specialist, provides key advice for care partners emphasizing the necessity of taking notes and for having a solid plan if issues arise, and he shares key questions to ask the doctor about bispecific antibody therapy.

Dr. Craig Cole is a multiple myeloma specialist at Karmanos Cancer Institute in Detroit, MI and in East Lansing, MI. Dr. Cole also serves as an associate professor at Wayne State University and at Michigan State University. Learn more about Dr. Craig Cole

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Transcript:

Katherine Banwell:

Dr. Cole, what sort of questions should care partners be asking the care team when a loved one is undergoing bispecific antibody therapy? 

Dr. Craig Cole:

I think one of the big questions and – oh first I would say write everything down. Write everything down and have your care provider write things down or record them. Because I think it’s important to have that – have something written on hand. In our house we put everything on the – instructions on refrigerator with a magnet to make sure everyone sees it. But the one – one big question to ask is, “What are the – with this specific antibody that the patient’s receiving, what is the risk of the of the cytokine release syndrome?  

What’s the risk of the neurotoxicity that we talked about in the timeline?” Because those can be very different. “When should I worry? And how long should I be watching for these side effects?” The other thing is to have a solid plan of what to do if there are – if there’s any side effects. And so frequently that doctors or providers will write a prescription for steroids or Tylenol to take if any of those symptoms happen, but also to have a phone number to call a provider or to call the clinic if something were to change. Because again, these aren’t symptoms that you want to sit on where you say, “Oh, I have a fever, no big deal.” I mean it’s definitely good to call, and so, having a plan set. And I would make sure that you have that written down and then talk back, repeat back to the doctor or the provider that the plan is set.  

It’s not a forever plan. It’s just doing those first few doses of the bispecific. And also knowing sort of – I think a really good question is knowing the long-term efficacy of these. I mean these therapies are – work really, really well, but also knowing what are the chances of this working, of it not working? And I always like to have a plan B. “If this doesn’t work well, what are we going to do next?” And I think that’s a very fair question to providers. 

Katherine Banwell:

Dr. Cole, is there anything else you’d like to add about caring for someone who’s being treated with bispecifics? 

Dr. Craig Cole:

I think that the biggest thing is how incredibly exciting these medications are. I mean, there are – I went through and talked about a lot of the bispecifics for cancer, but there have been revolutionary biospecifics for macular edema, for hemophilia, the bleeding disorder. And these are revolutionary drugs in cancer. And really, it’s incredible that – how well these drugs fight cancer. And the fact that they use your own immune system, not someone else’s immune system, not some chemotherapy, but using your own immune system is incredible. And so, I always tell people to be really encouraged that the technology is this – if you’d have asked me this 10 years ago about a bispecific antibody I would say that’s impossible.  

And now we’re at the cusp of that. And the other thing is to be involved in clinical trials, that all these, a lot of – there are a lot of clinical trials and bispecifics because it is the big, exciting thing. And so, if you have the opportunity to participate in a bispecific clinical trial, I would definitely encourage that because it really is the cutting edge of medicine these days.  

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

 
Dr. Craig Cole reviews the side effects of bispecific antibody therapy, the symptom care partners should be monitoring for, and the importance and impact of early intervention if any issues arise.

Dr. Craig Cole is a multiple myeloma specialist at Karmanos Cancer Institute in Detroit, MI and in East Lansing, MI. Dr. Cole also serves as an associate professor at Wayne State University and at Michigan State University. Learn more about Dr. Craig Cole

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Myeloma Care Partners | Understanding Bispecific Antibody Therapy

Myeloma Care Partners | Understanding Bispecific Antibody Therapy

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Transcript:

Katherine Banwell:

Do side effects vary from patient to patient? 

Dr. Craig Cole:

Yes, so they actually vary greatly from patient to patient and from drug to drug. There’s some bispecifics for some cancers that have low risks of cytokine release so low that they don’t even need to come to the hospital. And some of them have such a high risk of those cytokine release syndromes that people are in the hospital for a few days.  

The other thing is usually the more tumor someone has, the more disease and cancer they have, the higher those risks of cytokine release. And so, it does vary from patient to patient to and from medication to medication. 

Katherine Banwell:

What should care partners understand about caring for someone during therapy? 

Dr. Craig Cole:

One of the big things that care partners should look for or to be aware of are – is the timeline for a lot of those symptoms. The highest risk for the side effects, the things to look out for, the neurologic toxicity, the fevers, and shortness of breath, and things are in the first few days of each dose of receiving therapy.  

Some of those therapies actually because of the neurotoxicity, they don’t let anyone drive, any patients drive for the first few weeks after receiving a bispecific. So, knowing the timeline, that in those first few days, that you really have to check the temperature, have a plan, know who to call, watch for those symptoms. But as the weeks move on, like after the second dose, there’s much less toxicity, third dose, even less risk. Fourth dose and on is very rare to have any of those toxicities, and so then you can relax. And usually people are able to drive. So being aware of the timeline’s important. 

Katherine Banwell:

Yeah. Are there advances being made in the management of side effects for bispecifics? 

Dr. Craig Cole:

Oh yes, and so that’s the – that’s one of the really exciting things is the – is what I was just talking to one of our trainees about this, about the evolution of the bispecific antibodies have been to make them more effective, make them more sticky, make them engage those T cells more while decreasing the toxicities. 

And so the ones that we’re seeing that are in clinical trials now that hopefully will be approved soon have less of those side effects, less hospitalization, and actually have a longer frequency of being given. The other thing is that we’re really beginning to learn a lot about treating cytokine release syndrome, especially as severe cytokine release syndrome. So, there was a drug that was used to treat severe COVID called tocilizumab (Actemra).  

Katherine Banwell:

Yeah.  

Dr. Craig Cole:

And that was used when people came in with COVID symptoms which can be a lot like cytokine release. The would receive this medication to help control that. Now we’re using that to treat cytokine release syndrome.  

And there’s quite a bit of data, especially in multiple myeloma in using it prophylactically to prevent cytokine release syndrome. And there are studies that show that the usual rate in multiple myeloma, kind of the specialty that I have, the usual rate of cytokine release – some cytokine release is about 70 percent with using prophylactic tocilizumab, which is just an antibody against one of those cytokines, IL-6. It goes down to – up to about 25 percent, so 75 to 25.  

And really it has no adverse side effects and doesn’t do anything with the outcome or the effectiveness of the bispecific antibodies.  

Katherine Banwell:

Well, that’s an incredible difference, isn’t it? 

Dr. Craig Cole:

Yes, yes, that was really – the trick is trying to get insurance companies to approve it and to get hospital systems to approve it.  

But I am very confident that very soon as we get more data about using it prophylactically that they’ll be incorporating it into the guidelines. 

Essential Monitoring Following Bispecific Antibody Therapy for Myeloma

Why is a care partner essential for someone undergoing bispecific antibody therapy for myeloma? Dr. Craig Cole, a myeloma specialist, discusses the essential role of care partners following treatment, emphasizing the importance of monitoring for potential side effects. 

Dr. Craig Cole is a multiple myeloma specialist at Karmanos Cancer Institute in Detroit, MI and in East Lansing, MI. Dr. Cole also serves as an associate professor at Wayne State University and at Michigan State University. Learn more about Dr. Craig Cole

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Bispecific Antibody Therapy | The Important Role of Care Partners

Bispecific Antibody Therapy | The Important Role of Care Partners 

Transcript:

Katherine Banwell:

What is the role of a care partner for someone undergoing bispecific antibody therapy? 

Dr. Craig Cole:

Yeah, the care partner is, I think, a critical component of someone receiving bispecific therapy. And their reason is really to do with the side effects and monitoring the side effects of the therapy. What’s the big side effect of the bispecific antibodies is again when those T cells engage the cancer cells and they find the cancer, they release chemicals to destroy the cancer immediately.  

And those chemicals are from the T cells, can cause people to feel very ill, or can cause them to feel very ill very quickly, or they can have fevers, and they can have difficulty breathing. And that’s called cytokine release syndrome. Cytokines are the chemicals that the T cells are using to kill the cancer cells.  

Release, meaning that T cells are releasing that, and syndrome mean that different things can happen to different people. And the highest risk for the cytokine release syndrome is usually within the first two to three treatments, usually in the first two or three days of the therapy. And a lot of times when people get the bispecific antibodies, sometimes it’s given in a brief hospitalization like an overnight hospitalization, but then they go home.

And then the trick is monitoring for that cytokine release syndrome, the fevers that can be associated with that, shortness of breath, low blood pressure. And in having a couple people observing, watching for those signs and symptoms are really important. Because if cytokine release syndrome isn’t addressed immediately, it can progress to worse outcomes, meaning that the blood pressure gets lower, the difficulty in breathing gets worse.  

If let completely go, people can end up in the intensive care unit which is very, very, very rare. But that’s why we address this as early as possible. The other side effect, and probably kind of the most subtle thing, are some of the neurologic things that can happen with the bispecific antibodies. So, it’s the neurologic toxicity, or some people call it ICANS. And that’s when some of those cytokines that we talked about that are from the T cells can cross the blood brain barrier and cause patients to be confused.  

They can have word finding difficulties. They can feel – almost have stroke-like symptoms. They’re temporary, but they definitely need to be addressed. And sometimes patients may not be aware that they can’t find the right word, or they want to speak, and the words don’t come out, or when they speak it’s the wrong words are coming out.  

And that’s a real, real big sign that you need to call your doctor immediately, or your provider immediately if you have those neurologic symptoms. So, watching for those side effects, so low blood pressure, the high fevers, and stroke like symptoms. It’s not a stroke, but it’s just those chemicals in the brain that can cause people to have some neurologic problems. And again, if you address those immediately, they are definitely reversible.  

Myeloma Care Partners | How Can You Support Your Loved One During CAR T-Cell Therapy?

How can care partners be informed and prepared when a loved one is undergoing CAR T-cell therapy? Myeloma expert Dr. Adriana Rossi explains the role of the care partner in each step of the CAR T process, how to understand and monitor for side effects, and shares key advice for self-compassion and self-care when serving as a care partner for a loved one. 

Dr. Adriana Rossi is Director of the CAR T and stem cell transplant program at the Center for Excellence for Multiple Myeloma at Mount Sinai Health System in New York City. Learn more about Dr. Rossi.

Download Resource Guide

See More from The Care Partner Toolkit: CAR T-Cell Therapy

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CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

CAR T-Cell Therapy | Monitoring for Side Effects As a Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

An Essential CAR T-Cell Therapy Team Member | The Care Partner

Where Can Myeloma Care Partners Find Out More About Financial Support?

Where Can Myeloma Care Partners Find Out More About Financial Support?

Transcript:

Jamie Forward:

Hello and welcome. I’m Jamie Forward. Today’s program is part of the Patient Empowerment Network’s Care Partner Toolkit Series focusing on the role of the care partner when a loved one is undergoing CAR T-cell therapy.   

Today, we’re joined by a myeloma specialist who works with patients and their care partners. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your own healthcare team about what might be best for you. Let’s meet our guest today. 

Joining us is Dr. Adriana Rossi. Dr. Rossi, welcome. Can you please introduce yourself?   

Dr. Adriana Rossi:

Yes. Nice to be with you today. I am the director of the CAR T and Stem Cell Clinical Program at Mt. Sinai in New York.  

Jamie Forward:

Thank you so much. We’re glad to have you with us. Dr. Rossi, before we get into the role of care partners and the CAR T process, let’s talk about what CAR T-cell therapy is. Can you please give an overview of CAR T and how it works to treat myeloma?  

Dr. Adriana Rossi:

Absolutely. CAR T are genetically engineered cells. So, we generally use the patient’s own T cells, modify them to make them special killers just for that patient’s myeloma. And then, infuse them back into the patient over a process that I’m happy to go into in much more detail.  

Jamie Forward:

Sure. And, we’ll cover the process a bit later in the program. So, we can walk through that in just a bit. So, where does CAR T-cell fit into a myeloma treatment plan? 

Dr. Adriana Rossi:

Well, we originally had approvals in patients whose myeloma three or four times. But, in 2024, now the two commercially available CAR T products, one ide-cel (Abecma) and the other cilta-cel (Carvykti), are now both approved in earlier lines. So, we actually could potentially be eligible for CAR T after your first relapse. As long as you’ve had a number of therapies up front.  

Jamie Forward:

Okay. And so, when you say lines of treatment, that’s basically the number of therapies you’ve had so far? 

Dr. Adriana Rossi:

Right. The number of times the myeloma has come back. So, regardless of whether it’s one drug or three drugs together – we now often use four drugs together.  

But, we start off with a certain amount of myeloma and we treat it until it’s in remission as deep as we can. And then, we try to make that remission last as long as possible. Unfortunately, myeloma tends to eventually make its way back. That’s called the relapse. And then, you would start a new line of therapy. So, once the myeloma has come back after treatment, CAR T would be an option.  

Jamie Forward:

Okay. So, obviously a care partner is a part of this process, as is today’s focus of the program. So, can you walk us through the role of a care partner of a patient who’s receiving CAR T-cell therapy? 

Dr. Adriana Rossi:

Absolutely. And, many patients and their families will have experience with stem cells. I think the first thing to keep in mind is this is nothing like a stem cell transplant. Yes, there are cells that are collected. There’s chemotherapy and the cells are infused in a hospital setting. 

But, other than that, they are really very different experiences. And, given that’s what we would consider a long journey of CAR T through apheresis, which is the collection, then a bridging therapy while the cells are in manufacturing. Then, the hospital stay, and then the monitoring after. I think all of that is not a solo undertaking, and it really is essential to have one or more caregivers in that setting.

It’s really important to have a second set of ears at the consultation so that that amount of new information, all the big words, how things go together, meeting people is a little less overwhelming. The whole getting ready for the CAR T. There are a lot of different doctors’ appointments. We like to check that hearts and lungs are healthy. A dentist needs to check you out and make sure there’s no infection. So, just an overwhelming process. 

And, every step of the way, that’s going to be made easier if you have someone by your side.  

Jamie Forward:

Sure. It sounds like there’s a lot of coordination that takes place, as well. So, an extra set of hands is always useful there.  

Dr. Adriana Rossi:

Yeah. 

Jamie Forward:

Great. So, the care partner is a key member of the healthcare team as we established. So, who are the other members of the CAR T-cell therapy healthcare team?  

Dr. Adriana Rossi:

Yeah. It’s really important to recognize just how big that team is. We always have the CAR T physician. That one’s easy. A physician is usually supported by nurse practitioners or physician assistants and nurses that are part of again, getting all of the appointments organized. In all of this, we tend to have CAR T coordinators. Both to make sure the paperwork and the insurance side of things are done. The clinical appointments. But, it’s also important to recognize, as we were talking about, coordination. Transportation. Sometimes, patients need to stay close to a center that’s far from home. 

So, social work and all of those folks become very important. And then, there are a number of different steps with different drugs. So, our pharmacists are very important. And then, beyond that, any of the other doctors that keep our patients optimized. So, if there’s a cardiologist, a pulmonologist, an endocrinologist. All of those physicians working together. 

Jamie Forward:

Sure. As you’re preparing for the CAR T process and you’re meeting with patients and their care partners, what sort of advice do you give them about the process as you’re setting the stage?  

Dr. Adriana Rossi:

Yeah. I think it’s very important to ask questions and never think there’s a bad question, or a stupid question, or whatever. There are no limits. I know this is a completely new language, and I think it’s important even if you’ve asked it before, keep asking until it’s clear.  

And, don’t ever think you’re bothering us or anything. I’ve heard that, and it just doesn’t compute on our end. We are here to teach and support. Secondly, to take time. I think it’s really important to not think, “Oh, I’ll do this, and then I’ll run off and do something else, and then I’ll come back.” Or, have other commitments. Really allow both the patient and the caregiver protected time to be together and to just go through everything that this journey requires. And, for the caregivers to look after themselves. I think it’s really important when you’re trying to take care of someone who has the label of patient, you need to take care of yourself, as well so that you can then be of use to the process.  

Jamie Forward:

That’s great advice. So, as I mentioned, now we’re going to sort of walk through the steps of the CAR T process and what happens in each step, and how the care partner can support the patient during this time. So first, is there a consultation once a patient has been approved for this therapy?  

Dr. Adriana Rossi:

Absolutely. There are several consultations. The first one, once the patient’s identified by a referring physician, they will come and meet with myself and again, the coordinators and several members of that team to make sure that it seems like a good fit. That this is the right time, and identify any steps that we can take to really set that patient up for success.  

Jamie Forward:

Okay. And, how can the care partner participate in this meeting? Are there key questions they should be asking? 

Dr. Adriana Rossi:

Absolutely. Again, this is the beginning of the journey, and they should absolutely be there. Mostly because a lot of the information, this may be the first time they’re hearing again, the words. The concepts. The timeline. So, do ask about when things are going to be happening. As the CAR T physician, I do this all day. So, it’s very clear in my mind, but until it’s clear for them, again, ask more questions. Ask for clarification. 

Be clear on what resources are available. If there’s something that there is a question like transportation, or sequential appointments, or children in the family. All kinds of things. Really be as curious and as vocal as you’re up for. 

Jamie Forward:

Right. Arranging for childcare and pet care is probably really important during this time. 

Dr. Adriana Rossi:

Exactly. 

Jamie Forward:

What about financial planning? Is that a good time to ask about insurance and who to coordinate with there? 

Dr. Adriana Rossi:

Absolutely. Again, you will meet with social work. But, if there are specific issues that we’ve already identified, specific resources, specific paperwork, we can get that started right away.  

Jamie Forward:

Okay. Great. So then, after that, once all of that has been squared away and you’re ready to go into the CAR T-cell therapy process, there’s the T-cell collection, correct? 

Dr. Adriana Rossi:

So again, to distinguish it from stem cells, I think it’s important to know it is a one-day collection for CAR T. 

There are no injections or other preparations ahead of time. There’s no minimum number of cells that we’re aiming to get. It really is a one-day commitment to collect the cells that we collect, because they’ll be then engineered and modified before they’re ready. And so, it’s not the ordeal that sometimes you have to go through for stem cells.  

Jamie Forward:

Okay. So, the care partner should just be there during that time to be a supportive loved one. 

Dr. Adriana Rossi:

Exactly. And, it can be a long day. You’re tethered to the machine for a few hours. And, when all goes well, it is an exceedingly boring experience. So, be entertaining and be nearby. Always helpful.   

Jamie Forward:

That’s great advice. So, once the cells have been collected, can you walk through the next steps? I believe there are bridging treatments involved. Are those administered inpatient or outpatient? 

Dr. Adriana Rossi:

Absolutely. Bridging therapy is the therapy the patient receives while the cells are out being manufactured. And really, the goal there is not to get rid of myeloma. It’s just to prevent it from growing. Because myeloma that is not cared for tends to grow quite quickly. There are options to do it inpatient. To do it outpatient. There are certain therapies that would require the patients come to our center. Others that are easily given with their local oncologist. So, we really try to find something that the myeloma will be sensitive to, and that will hopefully not be too toxic, so there’s not a big recovery or a big downtime as we are preparing for the hospital stay for CAR T. 

Jamie Forward:

Okay. And, how can care partners support the patient at home during this time? I would imagine it’s sort of an anxious time. 

Dr. Adriana Rossi:

Absolutely. Many times, the bridging is something that may be familiar. Like, we’re recycling drugs they’ve seen before.  

But, these could be brand new drugs. And, I think every time you’re experiencing a new cocktail, there is some learning of how will you react, and the anxiety that can come with that, as well. There are a few times when there are delays in the cells getting ready. So, it’s not a very exact day, and that waiting period, wondering will they really come on the day they’re expected absolutely could be an anxious time. I think keeping each other company and just actively working to be your healthiest self for whenever the CAR T is ready, and knowing that working with your physicians, we are all working behind the scenes to work to the greater success hopefully is helpful.  

Jamie Forward:

Okay. That’s great. And then, finally in the process, the cells are infused back into the patient. Since this is a critical time for patients, how can care partners best be prepared to help their loved one 

Dr. Adriana Rossi:

One of the most common side effects is something called CRS. 

Which patients experience as a fever. And, I think many times in blood cancers, we really worry about fevers, because those could be infections. I think it’s important to be prepared and expect the fever so that again, it’s not oh no, what is this? We were waiting for it. It tends to come at a very scheduled time dependent on the product. So, just reassuring. Remembering yes, there are toxicities, but they are expected. Plan for them.

The medical team will have an antidote. We’ll have steps that we take depending on what comes up. And, the reason for being in the hospital is exactly to allow the medical team to respond very quickly. Most of the time, very little happens, and that is wonderful. So, if anyone is feeling bored, that is great. Celebrate it with them. No news is good news during the couple weeks in the hospital.  

Jamie Forward:

Okay. And, how long is the patient monitored for side effects in the hospital following new infusion? 

Dr. Adriana Rossi:

So, depends on the product. Ide-cel tends to have very early reactions. And so, our policy is one week for ide-cel and two weeks for cilta-cel because there, most of the side effects are around seven days in. So, we wait for the inflammation to peak and resolve. And, once it’s safe, we aim to get patients home. But, once they leave the hospital, they should for at least a few weeks be very close to the CAR T center, and usually require two to three visits a week for that close monitoring. 

Jamie Forward:

What are the short-term side effects associated with CAR T-cell therapy?  

Dr. Adriana Rossi:

Absolutely. So, the T cells are part of the immune system. Their job is to grow and expand once they’re in the patient, and pick a fight with the myeloma, which will cause a certain level of inflammation. So, some inflammation is good. But sometimes, they overdo it, and it manifests itself as a fever. We call that cytokine release syndrome. Cytokines are the molecules T cells use to communicate with other members of the immune system. So, this is part of the process we are causing, but we want to keep it in check.  

And, in the early days, we were very hesitant to do anything that could harm these precious T cells. But, we’ve learned in time that all of the antidotes, including tocilizumab-bavi (Tofidence) and steroids, don’t harm the effectiveness of the CAR T. And so, we’re very quick to intervene early and intervene with as many tools as we need. And so, that’s really become mostly just the fever. If left untreated, it can lead to low blood pressure and maybe an oxygen requirement. 

Again, usually quite easily reversible. When the inflammation happens around the brain or the nerves, we call that neurotoxicity. Specifically ICANS, which is the confusion and neurological deficits that occur with CRS. Neurotoxicity also includes other things like a peripheral neuropathy, cranial nerve palsies like Bell’s palsy has been reported quite frequently. And then, very rarely, delayed neuromuscular toxicities, which again, by patient selection are becoming more and more rare.  

And, the last is low blood counts, which we’ve touched on as part of the reason patients need such close follow-up once they leave the hospital. They’re very much at risk for infections, because they’re not making antibodies. Their neutrophils, which is the infantry type white blood cells, are low. And, their T cells are going to be low from the process. 

Jamie Forward:

Okay. And so, for a care partner, what should they be looking for? And, when should they contact a member of the healthcare team? 

Dr. Adriana Rossi:

I would say contact us anytime there is a question. It’s not too specific. Certainly, any fever. Any sign or concern for infection. And, any neurologic deficit. If someone is not acting themselves, the caregiver’s usually in the best position to recognize that. 

Jamie Forward:

Okay. And, what are the long-term side effects?  

Dr. Adriana Rossi:

Yeah. We’re still learning. Beyond a year, really there shouldn’t be many. We continue to support the patient until recovery of those antibodies, and T cells, and neutrophils. So, there’s a lot of preventive things. Monitoring and time. And, there are these rare neurological toxicities that have been reported, but they’re much less than one in 1,000. And so, it’s hard to learn or to make any generalizations at this time. 

Jamie Forward:

Okay. And, as far as monitoring at home once someone gets back home, in the weeks that follow their time in the hospital, are there certain supplies they should have? It sounds like maybe blood pressure? Perhaps a scale? 

Dr. Adriana Rossi:

Yeah. So, blood pressure and temperature probably are the two more important ones. We actually do discharge patients with a log, and for those first few weeks, we really would like at least twice a day for these numbers to be monitored. And, it’s patient-specific. So, the less you need, the more we graduate out to fewer measurements and less monitoring.  

Jamie Forward:

When it comes to diet and nutrition, are there ways that care partners can help prepare or benefit to a highly nutritious diet? Is there anything related to diet and lifestyle that might be important to know? 

Dr. Adriana Rossi:

No. I think there’s no restriction. The important thing is when your appetite is low, your body needs calories. We’re asking your body to get a lot of work done, and it can’t do that without calories. So, don’t be too picky on only eating fruits and vegetables. If it’s ice cream three times a day, go for it. Make sure you’re meeting a caloric intake. Certainly, nutrition is better. The only dietary restrictions we have are really kind of similar to after a transplant where we’re trying to avoid germs. So, foods that can be cooked, peeled, or washed are really the focus. Things like berries and salads can easily have germs sneak in. So, we do try to avoid those. And again, it’s usually just for that first month or two. Recovery tends to be quick. 

Jamie Forward:

Okay. Great. So, have a lot of ice cream on hand. So, how do you know if the treatment’s working? 

Dr. Adriana Rossi:

Well, most patients will have an M spike or light chain change. So, we can follow that by blood tests. And, as with any other therapy, it’s usually a monthly check of those numbers. 

And then, we follow the paradigm we see in stem cell transplants at around day 100 doing a bone marrow biopsy and a PET scan. 

Again, up to 90 plus percent of patients, will have a complete remission on their blood tests within a month. But, we wait until day 100 to really let that protein have time. There’s a certain time to clear from the system. Check the cells in the bone marrow and really give you full credit for all your efforts.  

Jamie Forward:

Okay. Great. So, we’ve sort of touched on this before, but I think it bears reiterating. So, why is it so important that care partners let the care team know about any changes they see in their loved one? 

Dr. Adriana Rossi:

I think early intervention really leads to success. Most of the toxicities will respond very well to an early intervention. If left untreated, be it an infection, a neurologic finding, a cell count issue, the longer it happens, the bigger of a problem it is, and the harder it would be to turn around. 

So, something that could hopefully be a quick visit to the office could then become an admission to the hospital, and we’d really like to prevent that.  

Jamie Forward:

Okay. Great. So, let’s talk a bit about self-care for care partners. I think this can obviously be a really taxing time. Why is self-compassion essential during this time when you’re caring for someone else? 

Dr. Adriana Rossi:

Because many times, again, the focus is on the patient. But really, we need to recognize it’s stressful for all of us. And, the whole medical team is taking care of the patient. Very few people are paying attention to the caregiver. So, they really need to be able to ask for help. Hopefully, again, it’s not a one-man job. It’s rally the village around the person. We do ask for those first few weeks that it’s 24 hours a day the patient be with someone. But, it doesn’t have to be one person. So, have someone else come in, so you can go exercise, or go get a cup of coffee, or just spend time dedicated to self-care. So that then you can be as strong and as present as you can for the patient. 

Jamie Forward:

And, what are signs of burnout? How can care partners recognize that? 

Dr. Adriana Rossi:

Very hard to recognize, and usually it’s someone else who needs to point it out. But, emotional exhaustion I think is the most common, because it is such an emotionally taxing time. So, having a difficult time concentrating. Being irritable or pessimistic when sometimes the medical’s team’s like, “Everything’s going great.” And still, you’re like, “No. But, it’s not going to last.” Putting a negative twist is usually part of that. You just don’t have the reserves to look forward. And then, changes in sleeping, or eating, or regular habits can also be a flag. 

Jamie Forward:

And, what advice do you have for care partners to make time for self-care? When can they find those spaces for themselves? 

Dr. Adriana Rossi:

I think the biggest thing is to not think that it’s being selfish or that you’re taking away from the partner. 

Think of it as something you are doing for the patient. You are not useful if you’re burnt out and if you’re spent. So, self-care really is a giving activity of strengthening yourself so that you can then be of most use to the patient.  

Jamie Forward:

I think that makes good sense. So, there are obviously social workers at the centers, and obviously these larger CAR T-cell therapy centers have a number of resources. So, what is available to help care partners during this time?  

Dr. Adriana Rossi:

So, social work will meet with the patient and the caregiver to tailor resources, and plans, and support in any way that is specifically useful to them. 

Again, if there is specific paperwork that needs attention. If there are resources, for example, lodging, transportation. All of these things are really tailored to the needs of each individual.  

Jamie Forward:

Okay. And obviously, this isn’t for everybody, but support groups are always a good idea, even if online. 

Dr. Adriana Rossi:

Absolutely. And, we have a number of those. We’re lucky to have a group of social workers, and they each lead different groups. So, if one doesn’t seem to be a good fit, I also think keep looking. There are very specific ones like younger patients or patients of any particular group. But, there are also general patients. There are transplant-specific. And, more and more, there are CAR T-specific groups where patients share their experience. 

Jamie Forward:

Yeah. It’s always nice to know that you’re not alone in these situations.  

Jamie Forward:

So, are there in-home services that can be useful for CAR T-cell therapy care partners during this time?  

Dr. Adriana Rossi:

I’d have to say that’s probably very specific to geographic areas. I happen to work in New York where there are a lot of home services, and it’s very population-dense, and a lot of the services are driven to that. I imagine in parts of the country where there’s quite a bit of distance between the facilities, there are probably programs that are more structured to provide those services. So, that’s probably fairly program-specific. But generally, yes. I just don’t know what they are for each part of the country. 

Jamie Forward:

Before we move on to audience questions, I’d like to add that the Patient Empowerment Network has a wealth of resources available for care partners. You can find those at powerfulpatients.org or by scanning the QR code on your screen.  

Dr. Rossi, here’s a few questions we received in advance of the program from our members. We can start with William’s question. How can a care partner manage the emotional aspects when a loved one is going through CAR T? 

Dr. Adriana Rossi:

I think be patient. Recognize that it’s a really difficult time, even when everything goes according to plan and the medical is very pleased that there’s nothing untoward. It’s just a really stressful time for both of you. So, it’s where we go back to the self-compassion, as well. Take time for yourself and recognize your needs as a caregiver in addition. So, tapping in, again, other friends. A small circle rather than a one-person job. And, being really open with social work on what resources can be helpful. Asking for help, again, is a brave act.  It’s not a sign of weakness at all. 

Jamie Forward:

Sure. And, I think it’s often that people will offer help, and you tend to decline because you think you can handle it early on. And, it is just so much easier to say yes. Say, “Yes. Bring over dinner.” Or, “Yes. I’d love you to come over for two hours while I go out and have a pedicure.” So, yeah. Always say yes when people ask you if they can help, because people want to help. 

Dr. Adriana Rossi:

Exactly. And then, it is that group activity, and it’s a shared experience. 

Jamie Forward:

Yeah. Okay. So, Marianne asks this question. She says how do the aftereffects of CAR T-cell therapy compare to those of stem cell transplant? 

Dr. Adriana Rossi:

Yes. Very different experiences. I think that’s one of my first and loudest messages. Stem cell transplants are really tough. Melphalan (Alkeran) is a very tough drug. The hair loss, the nausea, the weight loss we really do not see with CAR T.  

So, we mentioned you have to have your cells collected. You do get some chemo before getting the cells back. But, that’s as far as they are similar. The chemotherapy that you get before CAR T is called lymphodepletion. It only quiets down the T cells. It’s not a rebooting of all of the marrow the way we do with melphalan. And, the side effects are again, mostly driven by inflammation. So, fevers and neurologic deficits. Remembering that the fevers and CRS are expected in about 80 percent of patients. The neurologic side effects are in under 5 percent. So, much more rare. And, it’s usually with transplant, by day 100, if people were working before their transplant, they start to think of going back. With CAR T, I have patients who are 30 days out asking to go back to work, because they’re bored at home. You really just feel better much sooner.  

Jamie Forward:

Okay. That sounds like a pretty dramatic difference. And, here’s the last question we have from Debbie. She wants to know does the caregiver need to stay at the hospital room with the patient,  or are they only allowed during visiting hours?

Dr. Adriana Rossi:

I think that one is very specific to the center. At Mt. Sinai, we do have specific visiting hours. And, a few exceptions have been made for overnight depending on the specific circumstance. But, most of the time, that is a time the caregiver can go home, and sleep, and be ready at the time of discharge when we really do need them 24 hours.  

Jamie Forward:

Okay. That’s good to know. So, it’s center-specific. Great. So, before we end the program, I’d like to get your closing thoughts on the role of the care partner in the CAR T-cell therapy process. What message do you want to leave our care partner audience with? 

Dr. Adriana Rossi:

I think mostly to please reach out to us. 

We are there not only to take care of the patient, but the global patient experience. So, we are there to support the caregivers, as well. So, please ask questions. Many times, I’ll have had a conversation with a patient many times, and then the caregiver joins later and is hearing everything for the first time. So, please ask questions until everything is clear. And, remember to look after yourself. 

Jamie Forward:

That’s great advice. Thank you so much, Dr. Rossi. We appreciate you being here today. 

Dr. Adriana Rossi:

Thank you.  

Jamie Forward:

And, thank you to all of our collaborators. To access tools to help you become a proactive care partner, visit powerfulpatients.org. Thanks for joining us.  

Evolve | What You Should Know About Advances in CAR T-Cell Therapy for Myeloma

How is CAR T-cell therapy revolutionizing care for people with myeloma? Dr. Rahul Banerjee, a myeloma expert and researcher, shares an overview of how CAR T-cell therapy is evolving, important factors to consider when choosing to undergo this treatment, and how advances in research are impacting myeloma care. 

Dr. Rahul Banerjee is a physician and researcher specializing in multiple myeloma and an assistant professor in the Clinical Research Division at the University of Washington Fred Hutchinson Cancer Center in Seattle, WA. Learn more about Dr. Banerjee.

Download Resource Guide

Related Resources:

How Can Myeloma Patients Access CAR T-Cell Therapy Clinical Trials?

How Can Myeloma Patients Access CAR T-Cell Therapy Clinical Trials?

Will CAR T-Cell Therapy Be Approved for Earlier Lines of Myeloma Treatment

Will CAR T-Cell Therapy Be Approved for Earlier Lines of Myeloma Treatment?

How Is CAR T-Cell Therapy Research Advancing Myeloma Care?

How Is CAR T-Cell Therapy Research Advancing Myeloma Care? 

Transcript:

Katherine Banwell:

Hello and welcome. I’m your host, Katherine Banwell. Today’s program is part of the Patient Empowerment Network’s Evolve series, which was developed to provide you with the latest treatment information and research, helping you to feel empowered and confident during conversations about your care. In today’s program, we’re going to hear from an expert in the field discussing CAR T-cell therapy and the evolving treatment landscape. 

Before before we get into the discussion, please remember that this program is not a substitute for medical advice. Please refer to your healthcare team about what might be best for you. Joining us today is Dr. Rahul Banerjee. Dr. Banerjee, it’s so good to see you. Welcome. Would you please introduce yourself? 

Dr. Rahul Banerjee:

Of course. Thank you, Katherine, for taking the time to interview me. Thank you to everyone who’s listening. My name is Dr. Rahul Banerjee. I’m an Assistant Professor of Medicine at the Fred Hutchinson Cancer Center in Seattle, Washington.  

I specialize in multiple myeloma, which is a form of blood cancer that we’ll talk about, and other precursor conditions, for example, smoldering myeloma and AL amyloidosis. I have a heavy interest in CAR T therapy and bispecific antibodies and other types of immunotherapy for blood cancers, and I’m sure we’ll be speaking about that as well. It’s great to be here. 

Katherine Banwell:

And thank you so much for taking time out of your busy day. I’d like to start by talking about your role as a researcher. You’re on the front lines for advancements in the myeloma field. What led you here, and why is it important to you? 

Dr. Rahul Banerjee:

Absolutely. So, the short answer is that I love the art and the science of oncology, of cancer care. I feel like it really gives us a great chance to work with patients and really help them through the difficult chapter of their life. And the science, particularly in malignant hematology, is a word we use for blood cancers like myeloma, lymphoma, et cetera. There’s a lot of fascinating science about how do we train the immune system to overcome cancers of immune cells? 

In terms of why myeloma, you’ll probably hear this from many physicians who speak on this program. Part of it is the patients, and I love treating my patients with myeloma. They have the most interesting stories for me. Many of them are older and have been through a lot, and I worked with them for years for diagnosing myeloma, treating them through myeloma, monitoring for relapses, and so forth. 

And also the mentors whom I had. So, when I was a trainee in fellowship, I was not sure where I would go. I knew it was somewhere within blood cancers, but I had a mentor, Dr. Nina Shah, who is phenomenal, and she did a lot of work in multiple myeloma in particular, including around CAR T therapy, and I kind of molded myself, imprinted myself on her. And now several years later, here I am kind of working in this similar space, focusing again at the intersection of multiple myeloma and these immunotherapies, like CAR T therapy. 

Katherine Banwell:

We’ve been talking about CAR T-cell therapy for a number of years now. How has this treatment revolutionized care for patients? 

Dr. Rahul Banerjee:

Absolutely. So, the biggest benefit of CAR T therapy, I think, is how well it works. So, I’ll predominantly focus on multiple myeloma, but of course there are CAR T therapies that are approved for different kinds of lymphoma, and B-cell leukemia as well. But in brief, CAR T therapy, we train the immune system to fight back against the myeloma, against the cancer that’s there. And it’s phenomenal, because it’s the only living drug we have, really, in our toolbox. Everything else is dependent on the dose, right? As soon as the drug is out of your system, it stops working. CAR T-cells don’t work that way. They can live and expand and proliferate to get rid of the threat within. 

And at least in myeloma, for example, CAR T therapies regularly have response rates, meaning complete response rates, how quickly they knock all the myeloma parameters down to zero basically in the 70, 80, 90 percent range. Many patients achieve measurable residual disease, or MRD negativity, meaning by all the best tools available in 2024, no sign of the myeloma anywhere.  

That doesn’t mean cure, to be fair, but that’s wonderful. With other conventional therapies, to have one drug with one infusion have that big of an impact on the myeloma is phenomenal.  

The other benefit of CAR T therapy is that it is a one-time infusion. It doesn’t mean that patients can get one-time CAR T and never have to see a cancer doctor again because again, at least in myeloma, I don’t consider CAR T to be uniformly curative for patients. However, if you look at the studies, and there’ve been two randomized studies in myeloma of CAR T therapy versus standard therapies. One was a KarMMa-3 trial with a drug called ide-cel, a CAR T drug also known as Abecma. And the other one was CARTITUDE-4, which was a study of cilta-cel versus standard treatment. And cilta-cel is a kind of CAR T also known as Carvykti.  

Both studies saw improvements, dramatic improvements in the response rate, how many patients had the myeloma numbers come down, but also durations of response and progression-free survival. How long patients were alive and disease-free for.  

Literally just a month ago, we found out officially that the cilta-cel trial and the CARTITUDE-4 study, CAR T actually prolonged overall survival compared to standard therapies, which is what patients are looking for.  

But for me, what I love about CAR T the most is not just that you’re in remission for longer, or with cilta-cel you live longer, but that you live better. Both studies, and I’m very happy to see this incorporated, what we call patient-reported outcomes, which is an area of research of mine. Patient-reported outcomes are, as you can imagine, outcomes that are reported by the patient. Not the blood test for the myeloma, but how are patients feeling in terms of their quality of life, in terms of their fatigue, in terms of their pain.  

And in both studies, off the charts. CAR T does way better and way faster in terms of improving quality of life than standard treatments, to the point where the studies, for example, often for both of them, if I recall correctly, the first time point where they looked and compared the two arms was three months after CAR T. And already by then, night and day difference.  

The patients who got CAR T, the first month a little bit rocky, but after the first month or two, they’re doing better, because they’re not on myeloma treatments continuously. They’re still getting blood work checked and so forth, but they’re not on treatment. It’s a one-time infusion and monitoring thereafter. 

And I love that about it, and I think that explains a lot of the quality of life benefits that we see.  

For my other patients with myeloma, outside of CAR T, there is never a scenario where they’re observed. The vast majority of patients because myeloma is considered incurable, we keep them on some form of maintenance treatment, and those come with side effects. Those come with financial toxicity. That’s the word we use for high out-of-pocket costs. They come with what I would call time toxicity. That’s time spent on the phone coordinating shipments or coming in for this infusion or that infusion. 

CAR T has much less of that, and I think that’s phenomenal. So, I would say that it’s revolutionized the field, not just scientifically from the things that you’d expect a researcher to care the most about – for how long, you know, how deep are their remissions and how durable are their remissions, but also for the things that I care about. The art of oncology is how our patients are living, and that’s why I think CAR T is revolutionary. 

Katherine Banwell:

Dr. Banerjee, would you walk us through the currently approved CAR T-cell therapies for myeloma and share how these treatments work to combat myeloma? 

Dr. Rahul Banerjee:

Absolutely so. So, there’s two FDA-approved CAR T therapies right now for multiple myeloma. One is ide-cel, also known as Abecma. One is cilta-cel, also known as Carvykti. The mechanics of them are pretty similar. Both involve T-cells being collected from the patient and then turned into CAR T-cells, cancer fighting cells in a lab, then put back into the patient after a small dose, what we call lympho-depleting chemotherapy, that creates a void and makes room for the T cells. 

And then the T cells come in and are able to activate and proliferate and respond and kill off the myeloma. In terms of the two drugs, the differences between them, we might come back to that a bit in terms of just how they’re approved. Cilta-cel is currently approved as early as first relapse. So, second line treatment onwards in myeloma for patients who have disease that is refractory to lenalidomide (Revlimid) or a similar class of drugs.  

So, lenalidomide is Revlimid. So, if someone’s been on Revlimid and it stopped working, they could technically go to cilta-cel, which is Carvykti, as soon as second line. 

Ide-cel or Abecma is approved for third line treatment, meaning at least two prior relapses or two types of therapy that were stopped unexpectedly because of not working or toxicities or so forth. And those patients would have had to have received both an iMiD, like Revlimid, which is lenalidomide, a proteasome inhibitor, which is like Velcade or bortezomib, and a CD38 directed monoclonal antibody like daratumumab, which is also called Darzalex or Darzalex Faspro.   

Katherine Banwell:

CAR T therapies have been in use for several years now. As a clinician, what challenges are you facing with this treatment option? 

Dr. Rahul Banerjee:

Absolutely. So, I would say threefold, is the best way to describe it. So, I think the first and most practical, like the most important one is obviously access. It’s very easy for me to talk about CAR T therapy. I had the privilege of working at a big center, where I was just last week attending on our CAR T service. We’re big enough to have a CAR T service. 

Most patients are treated in the community, and they don’t have access to a doctor who’s personally familiar with CAR T. And so for them to get to CAR T requires a move to a big academic center, a big tertiary care center. Obviously, I think this talk is geared more towards the U.S. audience, but most of the world has no access to CAR T, period, except for research protocols, and that makes things really tough. So, I think that’s one unmet need in general, where those patients who cannot get to CAR T never see me, and that’s a big disparity in the field.  

Two, I would say that the autologous CAR T products we have, autologous is the word that we use for the T cells that are coming from the patient themselves. Both Abecma and Carvykti, again, it’s the patient’s own cells that are being taken out, turned into CAR  
T cells, and put back. That manufacturing process takes time. Typically, I tell patients to expect about one to two months, closer to two months often, between the day that the T cells are taken out and the day they’re put back in again, what we often call the quote unquote “vein-to-vein interval.” And that’s hard because for some patients that’s not practical. 

The myeloma is, you know, so aggressive, behaving aggressively, that they cannot wait. There’s no drug I can give them where I can wait two months for the T cells to be manufactured. We’re getting better at it. The drug company is working better at it. There are a lot of investigational products that are not FDA approved yet that are looking at rapid manufacturing, where can you grow these  
T cells and the CAR T cells in two days or one day, instead of several weeks? I think that’s really interesting. 

There are studies of allogeneic CAR T cells, where the T cells are pre-manufactured from a healthy donor and manipulated so they won’t cause any other problems, but will attack the myeloma. So, a lot of research happening there, but that’s the problem for patients where they cannot get to CAR T therapy.  

And then the third unmet need would be – I’m seeing more of this, unfortunately, right? CAR T therapy is not considered curative for myeloma. Have I met people who are doing great years out from myeloma? Yes, from CAR T therapy, and I love that. In the original LEGEND-2 study, the study that led to the CARTITUDE-1 study that led to the approval of cilta-cel, which is Carvykti. 

If I recall correctly, about 20 percent of patients on that first Chinese study years ago are alive and disease-free five years later. That’s not enough, right? I don’t want it to be 20 percent, I want it to be 100 percent. And so we have work to be done there in terms of what do we do when the myeloma, the CAR T cells stop working, or they’re out of the system and are no longer there to fight back. What do we do next? And I think that’s another unmet need still. Despite all the advances, what to do after CAR T, no one really knows. 

Katherine Banwell:

Yes. Well, how is success measured for CAR T-cell therapy? 

Dr. Rahul Banerjee:

It’s a great question. So, traditionally, the metric in multiple myeloma has been achieving a complete response. So, having the M-spike, the antibodies that are produced by the myeloma cells, come down to zero.  

So, either the M-spike, or for some patients, that may be the kappa or the lambda, which are fragments called light chains of antibodies, coming down to the normal range. The hard thing about those is that they take time. I’ve had patients who get CAR T therapy, and their bone marrow is completely clear, including MRD, measurable residual disease, as I’ll talk about in a second, but the M-spike takes months. 

I had one patient where it took a year and a half for the M-spike to finally come down to zero. And it’s frustrating because I would say that, look, in my heart, you’re in remission, but if I were a lawyer, I wouldn’t be able to say that, because technically the M-spike is not quite zero yet. Your body’s just recycling that antibody. It’s not all the way down to zero, and that makes things tough. So, I don’t think that’s a great barometer to use.  

I think MRD, which is again, a bone marrow test that we can spend more time talking about another day, is helpful. And at the one-month mark, achieving MRD negativity.  

So, if you look in the bone marrow, by all the best tests available in the United States in the year 2024, and you can’t even find one out of a million cells that are myeloma, that’s obviously great to see.  

That doesn’t mean that if it doesn’t happen, the patients are going to do poorly. There’s a lot more to CAR T than that. So, I think MRD negativity is probably the best short-term barometer. I think the best long-term barometer would be progression-free survival, which is, again, the medical word of saying how long is someone alive and in remission for. 

With cilta-cel, which is Carvykti, again, in the CARTITUDE-1 study, which led to its approval, its first approval for four prior lines of therapy. There, most patients, the median progression-free survival was 35 months. So, almost three years. That’s amazing, right? Three years of mileage of coming in for blood work, some supportive care, IVIG, which is a type of antibody transfusion, but not needing myeloma treatment. That’s great. That’s the bar that we’d be looking for from an efficacy perspective. I think the other thing, just to talk about it, I’m sure we’ll come back to it, would be safety, right? Because these cells, these therapies do come with side effects.  

And so I think the other bar by which, in the future, I may compare CAR T therapies as more come to market, would not just be this progression-free survival, which is how long are patients in remission for and disease-free and alive. Not just MRD negativity, which is how the bone marrow biopsy looks at day 28, one month after CAR T. But also the safety profile. Are we seeing any scary, concerning, delayed toxicities? And if we don’t, that would be another bar for success in my mind, especially as we move CAR T to earlier lines, where other treatments are available. 

We have to make sure that the benefit-risk ratio for CAR T remains favorable. 

Katherine Banwell:

Yes. Well, let’s talk about side effects of CAR T-cell therapy. What advances are being made in managing them? 

Dr. Rahul Banerjee:

Excellent question. So, I break the toxicities into short-term and long-term toxicity of CAR T therapy. And this is actually fairly similar for both, regardless of the underlying disease, whereas lymphoma, leukemia, or myeloma, very similar. Just so everyone, just to reorient the audience, short-term toxicities, people often talk about the big two. I’m going to say the big three, actually. The first one is cytokine release syndrome, or CRS, which is inflammation, typically causing fever, sometimes low blood pressure. 

The second is neurotoxicity, or ICANS. For reasons that aren’t entirely understood, sometimes all those chemicals from inflammation can cause people to feel a bit off mentally or cognitively. Sometimes people might not be able to talk, or might not talk correctly, or sometimes have issues along those lines. 

And the third, I would say, is low blood counts or infections. Both the lymphoma, leukemia CAR Ts and the myeloma CAR Ts very rapidly deplete the good plasma cells or the good lymphocytes, the good cells in the bone marrow, and so immediately you see patients at risk of infections. 

And for a complicated number of reasons, one of which being cytokine release syndrome, CRS inflammation within the bone marrow, where all these cancer cells are hiding, the stem cells in the bone marrow hide away, right? They kind of go into a bunker to stay away from all of this. And so patients often have low blood counts for significant amounts of time after CAR T therapy, something called hematotoxicity. 

Those are short-term toxicities. Long-term, very briefly, that risk of infection and low blood counts is still there, I would say, for up to a year after CAR T therapy, sometimes longer for some patients. There is a risk, obviously, of the original cancer coming back, in this case the myeloma, particularly myeloma.  

And three, there are rare delayed toxicities to be on the lookout for. So, one of them, for example, with cilta-cel or Carvykti, the numbers are hard to see what the rate is prospectively because it’s been going down with time.  

But rarely, I would truly in my heart say 1 percent of the time, if not less, patients can get Parkinsonism, where they’re not able to move as rapidly, they’re not able to, they’re kind of shuffling gait, having tremors, et cetera. Not the same as normal Parkinson’s disease, because the normal meds don’t work, just time is often the only thing that really makes a big difference. 

Technically, there’s a box warning on all CAR T therapies now about a risk of second cancers. That risk is not new to anyone who’s ever received any treatment for myeloma because from the very beginning, we tell people that these drugs have been linked to a potential risk of second cancers in the future.  

In terms of strides that are being made to improve that, I think we’re making a lot of improvement. So, I think the biggest thing that we’ve learned, and I remember when I was a trainee, for example, when I was in my medical training, the early days of CAR T therapy – actually out in Philadelphia, I trained at Penn – and there, we were scared about trying to tone down the inflammation.  

When these side effects happen in the short term, the goal is if the patient’s obviously having side effects, and the question is, “Can we not kill the T cells? Can we just dial that down?” Say, “Look, I’m happy the T cells are angry. I’m happy they’re killing the cancer, the myeloma in this case. But can you just dial it down a little bit with a medication called tocilizumab (Actemra), or corticosteroids like dex?” 

We used to be very nervous about doing that because we said, look, the patient’s put all this blood, soil, sweat, and tears right into this CAR T therapy, and we don’t want to do anything that can hinder the T cells from working.  

Now we know that that level of inflammation is not doing anyone any favors at all, and so we’re able to really start these medications to just dial down the immune system faster. As soon as someone has a fever, for example, at many centers, we do consider, within an hour or two, giving one of those medications. Don’t wait till they’re in the ICU, give it then.  So, I think just tweaking our algorithms has made probably the biggest difference, in my mind, to make CAR T safer.  

Other things that have helped, I think, are better understanding of why patients have these other toxicities and strategies to prevent it. And so, for example, the neurotoxicity risk, some of it is part of disease burden. We think that patients who have a lot of disease going into CAR T therapy may have more toxicities. So, giving better treatments as, quote-unquote, “bridging treatment” before CAR T therapy that we have better, newer treatments now, have sometimes helped to really debulk the disease before going to  
CAR T.  

That’s helped a lot with side effect management. In terms of long-term risk, the third thing that I really encourage all my patients and all my oncologist partners in the community to really push for is the infection risk and how do we prevent it? So, I think probably the biggest thing that we’ve recognized is intravenous immunoglobulin, which is IVIg, which is basically an antibody transfusion.  

When people donate blood, they also donate plasma, often, and the plasma contains antibodies against whatever they themselves have fought off circulating in the area – viruses, colds, et cetera. 

You can take all those antibodies, put them all together into a sterile bag, and give it to the patient who’s gotten CAR T therapy. Because the patient’s gotten CAR T therapy, assuming it’s working, which it normally does for several months, right, to knock out all cells, good and bad immune cells, that patient is not making any antibodies at all. They’re a sitting duck for infections. And so I would say IVIg, using that routinely now is not just the exception once they’re having infections, but even in the absence of infections, just giving it.  

Insurance companies are not happy with me when I suggest that because it’s expensive, but that’s the right thing to do for patients, and I think that has helped a lot, in my experience, for all of these immunotherapies, both CAR T and bispecific antibodies, to lower the risk of infections.  

Katherine Banwell:

Can you share any updates in CAR T-cell therapy research? 

Dr. Rahul Banerjee:

Sure. So, several. I would say the first, I alluded to very briefly earlier, was how do we make that vein-to-vein time shorter? So, the vein-to-vein is, again, from the moment that the T cells are collected to when they’re put back into the patient.  

And so a lot of research is how do we make that better? We have rapid manufacturing protocols that, again, where the T cells are taken out and manufactured within a couple of days and brought back into the patient. They’re still testing for safety and sterility and everything that needs to be done, so it’s not overnight, but still, one or two weeks’ worth of vein-to-vein time is way better than one to two months.  

The allogeneic CAR T cells that are coming from a healthy donor, those are fascinating, right? Because if the cells are pre-manufactured, there’s no risk of them not manufacturing or manufacturing in an odd manner, what we call auto-specification. They’re ready from a healthy donor, ready to go. 

And one of the studies that was presented last month at our International Myeloma Society meeting in Brazil, the time, the median time from when the patient went on the study to when they started that lympho-depleting pre-CAR T therapy was one day, and that means they got CAR T therapy within one week of going on the study. That’s phenomenal. And so I think that research is ongoing.  

There are some side effects about allogeneic, healthy donor CAR  T-cells in terms of making sure the T cells stick around and don’t cause other issues. Sorry, for another day. I think that’s one area of research.  

I think the other big area of research is how do we make CAR T-cells work for longer for more people? There are easy ways, and there are controversial ways to do that. So, I think the easy way is can we use MRD negativity or other tests to identify who is at very low risk of relapse and monitoring them appropriately.  

There are patients where, in the future, we may talk about doing some form of post-CAR T maintenance therapy. Again, the bar for that should be set pretty high, and it is set pretty high because as I mentioned earlier, many patients prefer CAR T therapy, not just because of the deeper remissions and longer remissions, but because it truly is time away from treatment. But they’re still coming in for the IVIg and the blood work and seeing a doctor, et cetera, but they’re not getting daily treatment with lenalidomide, which is Revlimid, or pomalidomide, or Pomalyst, or something like that. And that’s wonderful. 

However, there may be some patients where some form of strategy will use one of those medications or experimental medications. There’s a newer class of the lenalidomide, Revlimid, pomalidomide, Pomalyst called CELMoDs.  

They’re not approved yet, but drugs like iberdomide or mezigdomide that work better, and not just against the myeloma. They actually make T cells stronger, believe it or not. 

And so in the future, there may be scenarios where we recommend for certain patients that, hey, in your particular case, after CAR T therapy, to keep the myeloma away, I’d recommend using this form of maintenance, a pill or something like that, just low dose to, again, keep the myeloma at bay and keep the T cells, in this case, the CAR T cells strong. So, I think those are all areas of exciting research.  

And then the last thing I would say is, we have several novel CAR T therapies that are being studied that may work better and safer than the existing products. Some of them, which are in early phase studies, actually target two proteins at once. The idea, going back to one of the earlier topics I mentioned, is that if the CAR T cells see that protein BCMA, they immediately destroy the cell that’s holding that. But what if the cell learns to turn off BCMA? All of a sudden, it’s invisible to the CAR T cells, and you’re right back to starting square one again. 

And so the idea is that there are CAR T cells that are being developed that target two proteins at once, kind of what’s called origating, where if it sees this or this, it’s immediately able to attach and bind that cell.  

The idea being that it’s easy for a myeloma cell – not easy. It’s possible for a myeloma cell, just by dumb luck, bad luck for the patient, to mutate in a way that shuts off that one protein. For it to simultaneously be able to do that for two separate proteins at once, the odds are much lower.  

And so the idea with dual targeting is you may be able to knock out more cells more durably, or even knock out the myeloma precursor cells that aren’t quite myeloma cells, but are there, what we call stem cells under the hood that are still malignant? So, a lot of those areas, I think, are really fascinating. Obviously, we need a lot more research in those particular areas before they’re ready for prime time. 

Katherine Banwell:

Yes. What is GPRC5D? 

Dr. Rahul Banerjee:

Great. Yes, so it’s a mouthful, is the best way to describe it. It’s an interesting protein. It’s a protein that, I alluded to that, it’s a second target that’s being targeted by some CAR T cells, for example, either in addition to BCMA or by itself. Several companies are looking at that in trials.  

GPRC5D is interesting because we don’t know what it’s for. BCMA, we know exactly what it’s for and why good and bad plasma cells, again, the bad plasma cells being the myeloma, why they express it. No one knows for GPRC5D.  

In the field, we’ve put almost all of our myeloma eggs into the BCMA basket, historically speaking, and all the approved immunotherapies, CAR T and bispecifics in myeloma, with one exception, which is talquetamab or TALVEY, all target BCMA. So, we need to not put all our eggs in that basket. And so GPRC5D targeted therapies, again, there was one approved bispecific antibody, which was not the focus of today’s talk, called talquetamab or TALVEY.   

There are investigational CAR T products that target GPRC5D as well. At least from the limited experience that we have, there seems to be no correlation between them.  

In the future, do we know that someone needs to get BCMA therapy first and then GPRC5D therapy later? We don’t know that, actually, and that’s one of our areas of research and one of my areas of research as well. What if we do it the other way around, right? What if we give GPRC5D first and then do BCMA? We don’t know. 

So, I think one of the big questions in the field is sequencing, which is the word of like, what drug do we use first and when? We’re working on a paper, the International Myeloma Working Group is working on a big, extensive paper to try to put all the evidence together, but that’ll be a moving target.  

Katherine Banwell:

Yes. Patient participation is essential in advancing myeloma research. How do clinical trials impact care? 

Dr. Rahul Banerjee:

Absolutely. So, phenomenally and importantly, I think it’s a short answer. It’s worth noting that clinical trials come in all shapes and sizes. People often assume that clinical trial means, by default, a Phase I study, first time in human being, a quote-unquote “guinea pig.” That’s true for a minority of studies, and that’s very important for us to understand how best to make the drug work better. I would say the vast majority of trials that I put my patients on are not like that. They’re often bigger Phase II or Phase III studies. 

As an example, you know, both Abecma and Carvykti, those were already approved in later lines, but to get them approved in earlier lines, we had to run a study of using them earlier versus not using them earlier. So, that’s a good example where the drug is FDA-approved, it’s just the sequencing of it that’s new.  

There are trials of supportive care. We’ll be opening a study, I alluded to this, the side effects of GPRC5D targeted therapies with taquetamab. We’ll be opening a study that randomizes patients to one of four different supportive care strategies to figure out which one actually works to make the taste issues better. Because we don’t know until we try, right? If we don’t do a rigorous study, and we just go by, “Oh, I had one patient once where this worked, and one patient once where this worked,” that’s not a scientific way of answering questions, and we’re not really able to advance the field to help all patients.  

So, that’s where I think clinical trials come in handy. That, and I alluded to all these newer investigational CAR T therapies that might actually work better and be safer than the existing one. They’re all coming through investigational trials.  

So, trials is kind of how we get these drugs, one, these newer ones to market, but also how we learn to make them better. And we have trials, all sorts of trials, looking at all sorts of, again, not just new drugs, but also where to put the drugs, right? Where to sequence the CAR T therapies, or what supportive care strategies do we use? And the trials are kind of the linchpin of making the field work better. Again, not just for some patients who happen to do well, but for all patients. The only reason we’ve found out what works for all patients is by doing clinical trials.  

Katherine Banwell:

I’d like to get to a few questions that we received from our audience members prior to the program.  

Dr. Rahul Banerjee:

Yes, of course. 

Katherine Banwell:

This one is from Jennifer. Why do CAR T-cell transplants not last longer? Is it possible to do a second transplant if the first CAR T transplant stops working?  

Dr. Rahul Banerjee:

It’s a great question. So, it’s an excellent question. So, the only thing I would say semantically is, right, in my head, CAR T cells are not transplants per se, because I’m not changing the bone marrow. So, I would transplant a stem cell transplantation, separate from CAR T.   

Why do CAR T cells stop working? So, the short answer is we can speculate. We don’t know for sure for any individual patient. Three different buckets are involved. Three different things can happen. One, the T cells can stop working or disappear from circulation. So, that’s possible. CAR T cells don’t last forever. That’s actually okay, right? People often wonder like, “Man, I wish the CAR  
T cells could last forever.” I don’t know that I’d want that because as I alluded to, for as long as the CAR T cells are there, patients are immunocompromised, and so that can certainly interfere with the quality of life.  

So, it’s not necessarily true that the CAR T cells need to be there forever, but if they’re not there, or if they’re exhausted, which is actually a true scientific word for them not being able to activate and kill that cell when they recognized a protein, the BCMA, that’s one problem.  

The second problem is the myeloma cells can mutate. I alluded to this briefly earlier, where the cells can learn to shut off the protein, BCMA, or they can mutate the protein in just a way that the CAR T is no longer able to bind.  

And the third is something called the tumor microenvironment. And this is a little bit more complicated, kind of a grab bag of different things here. The idea is that myeloma cells have a lot of tricks, and they can use all of the cells around them to make it hard for the CAR T cells to get in, to get into the bone marrow and kill them all. And the T cells can be shut off before they even get there.  

So, it’s one of those three things in general. Which one is it for an individual patient? Hard to say. And so hopefully in the future, we’ll have better diagnostic tests to be able to identify who is a patient where another BCMA targeted therapy would work well versus, “Oh no, these myeloma cells are no longer expressing BCMA, let’s move on to a different target like GPRC5D.” We’re not there yet. We’ll get there hopefully in a couple of years, is my goal.  

Then, you know, Jennifer, that’s a good question. Well, can we do a second CAR T? And that’s very practical. What I would say is if the first CAR T therapy did what we expected it to do, if it lasted for as many years as I would expect for Abecma, that’s typically 12 to 18 months. For Carvykti, that’s typically over 24 months.  

If it worked and then it stopped working, and then probably the T-cells are long gone, it’s reasonable to try CAR T therapy again. In general, I would recommend, I strongly recommend a different CAR T-cell therapy, even if it’s targeting the same class, like BCMA, it’s going from Abecma to Carvykti or vice versa. 

The risk with giving the same CAR T-cell product again is that even though the T cells are a patient’s own T cells, the protein is slightly foreign. Abecma was derived from decades of mouse research. Carvykti was made from decades of llama research, believe it or not. Again, there’s no mouse or llama involved with the actual products nowadays, but in making the sequence years ago that came to them, they are foreign. There are foreign sequences on them, and so everyone’s host immune system eventually recognizes these cells as foreign.  

And so if you were to give the exact same product again, immediately the body would reject it the second time around, because it recognizes them and has learned to recognize it as foreign. But changing to a different CAR T cell is very reasonable. 

And again, for these newer GPRC5D targeted CAR T cells that, again, don’t target BCMA the way that Abecma, ide-cel or cilta-cel, Carvykti do, but target a different protein entirely, for those patients generally there’s no restriction on whether they’d received a prior CAR T cells. Ideally, it should be at least several months away, at least like a year or so, but if that’s happened and they stopped working, very reasonable. In fact, some of the trials actually require that patients going on to the study of a GPRC5D product have had a prior BCMA therapy of some sort before, and so they’re kind of built into the architecture of things. So, I think it’s very reasonable.  

Obviously, there are some unknown unknowns, right? What do you do if the T cells are being manipulated twice, so to speak. Patients ask me about that. I will say just to put that fear to rest, in general, by the time that someone’s had myeloma come back after the first CAR T cells, I alluded to this, the CAR T cells are long gone. So, there’s nothing left. But again, every case is different, and future research will help us kind of figure out how best to do this. 

Katherine Banwell:

Yes. We have one more question from Rita. She wants to know if there is an age limit on CAR T-cell therapy. 

Dr. Rahul Banerjee:

It’s a brilliant question. So, in brief, no. It’s a short answer. My oldest patient who got the CAR T is in their 80s and handled it across all my years at UCSF and here at Fred Hutch. More important than chronological age is physiologic age in terms of how robust they are, how robust they feel in terms of going through this. What I recommend, I’ve heard of centers that do CAR T therapy for patients in their 90s, for example. So, I think it’s not so much age, it’s how fit they are. 

Fit is easy for me to say. What does that actually mean? Typically it’s a combination of, you know, like cognitively, how are people doing? Because obviously if someone has baseline dementia, which is pretty uncommon, for example, maybe CAR T is not the best use of their time. The biggest thing that I think gets some of my older patients in trouble is frailty.  

So, just not being as fit as they were before in terms of muscle strength, being able to move around quickly, and so forth, or cardiovascular issues. Because it’s worth noting that with CAR T therapies that we have now, probably 60, 70 percent of patients will get CRS, cytokine release syndrome. So, that’s fevers and low blood pressure, that’s what I said earlier.  

But if you think about it, a fever of 104 degrees Fahrenheit, your heart rate’s going to be like 130, 140 beats per minute, beating very fast for several hours, sometimes longer than that. If you’re having low blood pressure, it’s your heart that has to push blood to overcome that low blood pressure. Can someone’s heart handle that level of stress? As people get older, that obviously gets harder.  

So, if someone is already just 75 and were being considered for CAR T therapy, certainly I think it’s very reasonable to talk about it. I would ask someone where I may have them meet with a cardiologist beforehand, possibly a geriatrician as well beforehand, just to see how can we optimize their health to make CAR T as safe as possible for them? So, it’s definitely possible. 

Katherine Banwell:

Well, thank you for that, Dr. Banerjee. And those were all great questions. If you have more as part of the audience, please continue to send them to question@powerfulpatients.org, and we’ll work to get them answered on future programs.  

Dr. Rahul Banerjee:

Absolutely. 

Katherine Banwell:

Well, Dr. Banerjee, we learned that the field of myeloma care and CAR T-cell therapy is advancing quickly. As we close out the program, what are you excited about? Why are you hopeful? 

Dr. Rahul Banerjee:

Absolutely. So, I think I’m excited because, especially for CAR T therapy in particular, at our center, for example, we used to only be able to do like one or two patients per month. It was a very steady, low stream, because there were a lot of issues with manufacturing, and it was during the COVID pandemic, and there were supply chain issues, et cetera. 

And there were studies, and I remember them, very dark studies in 2021, 2022 even, that patients were more likely to die on the  
CAR T waitlist than they were to actually get CAR T therapy. That’s terrible. And we’ve come a long way since there, where our capacity, every year we’re doing more and more patients to CAR T therapy per month, which is wonderful. 

And so what I would say is that makes me hopeful, right? Because CAR T therapy, I’m not saying that everyone is required to get CAR T therapy. I have plenty of patients who hear about it and are like, oh, no thanks. I’d rather stay with what I’m getting right now with my local oncologist. And that’s okay, but I want it to be an option for as many patients as possible, and I think we’re making strides there. 

And so I think what I would say, the kind of closing words here is, we only can get you CAR T therapy if we know about your case and if you know about us. And so what I would say, I’m sure to people listening to this, you’re very motivated. And so you know the importance of having a myeloma specialist in your field. 

What I would say is my patients who do the best are the ones who are co-managed. They have a doc out in the community. I have patients from Idaho, Montana, Alaska, Eastern Washington, et cetera. They have an oncologist who knows them well, who knows their community well, easy to get to, can handle everything. They’re a jack of all trades and very good at it. And then they have me, who they see periodically for CAR T evaluation, just discussions about CAR T by telehealth, something along those lines. 

And I’m able to talk about CAR T therapy in detail and answer their questions. And so what I would say is, I’m hopeful that that trend will continue, and that if someone’s even interested in hearing about CAR T therapy, they don’t meet me for the first time when they actually need CAR T therapy right then and there. They meet me years beforehand to just talk about CAR T, so they know it’s an option for them. 

And that time – because we don’t have as long of a wait list as we do, and we used to do, if and when the time comes that we all talk, me, the patient, the caregiver, and the primary oncologist, and say, “Look, I think now is time,” we’re able to make it happen. 

Katherine Banwell:

Yes. That’s a promising outlook to leave our audience with, Dr. Banerjee. Thank you so much for joining us today. 

Dr. Rahul Banerjee:

Absolutely. The pleasure was all mine. Looking forward to seeing many of you on a future episode of this. 

Katherine Banwell:

And thank you to all of our collaborators. To learn more about CAR T-cell therapy and to access tools to help you become a proactive patient, visit powerfulpatients.org.  

I’m Katherine Banwell.

Thanks so much for being with us today.  

Evolve | What You Should Know About Advances in CAR T-Cell Therapy for Myeloma Resource Guide

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Myeloma Care Partners | Understanding Bispecific Antibody Therapy

What is bispecific antibody therapy? Dr. Craig Cole, a myeloma specialist, explains how bispecific antibody therapy works to kill myeloma cells, how the treatment is administered, and which patient type the therapy is most appropriate for.

Dr. Craig Cole is a multiple myeloma specialist at Karmanos Cancer Institute in Detroit, MI and in East Lansing, MI. Dr. Cole also serves as an associate professor at Wayne State University and at Michigan State University. Learn more about Dr. Craig Cole

See More from The Care Partner Toolkit: Bispecific Antibodies

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What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Proactive Steps for Supporting Your Loved One Through Bispecific Antibody Therapy

Bispecific Antibody Therapy | The Important Role of Care Partners

Bispecific Antibody Therapy | The Important Role of Care Partners 

Transcript:

Katherine Banwell:

Dr. Cole, let’s start with some basics. What is bispecific antibody therapy? And who is it right for? 

Dr. Craig Cole:

Yeah, in cancer medicine kind of to describe bispecific antibodies we need to really start with what T cell is.  

Because in cancer medicine the – really all of the bispecific antibodies engage T cells.   

So, T cells are a cell that’s in our bodies which help destroy cancer cells naturally. And so, the T cells, when we have any mutations in any of the cells in our body and it starts to become cancerous, the T cells come in and wipe it out before it even gets started. And so, part of the reason that people get cancer is that those cancer cells find a way to evade the T cells. And usually what they do is they hide. They’re able to masquerade as normal cells, and the T cells that should destroy them just slide right over them or check their ID and say, “Well, you’re okay,” and let them go.  

Then the cancer cells can grow. And so, what the bispecific antibodies do is that a regular antibody is shaped like a Y, and usually both ends are really sticky to stick to anything, usually bacteria, viruses. And that’s the antibody – is the way our immune system fights infection. And antibodies are sticky. They got two sticky ends. What they’re able to do in the laboratory is make one of the sticky ends to an antibody not produced by people but produced a laboratory. One sticky end is specific to the T cell. One sticky end is specific to the cancer cell. And when you give this drug, it brings the T cells that have been ignoring the cancer right up against the cancer cells. And so, all of a sudden, the T cells that destroy cancer that have been ignoring the cancer cells are suddenly made aware of the cancer cells.  

And as soon as they see those cancer cells, they begin to kill the cancer cells. And so, it brings the cancer hunting T cells together with the cancer cell so the T cells can destroy the cancer.  

Katherine Banwell:

Okay.  

Dr. Craig Cole:

And who is it right for? Most, if not all, of the bispecific antibodies that are approved now are for people that that have cancer that’s advanced, that has failed several therapies. And that’s the usual place where new drugs go is for the people who are most in need, the people who have exhausted a lot of other options. And so really it’s right for anyone who has advanced cancer, who needs new therapeutic options. 

Katherine Banwell:

How is this therapy administered and what is the frequency? 

Dr. Craig Cole:

Yeah, so usually for most by bispecific antibodies, they’re administered subcutaneously under the skin, and some are administered IV.  

Some are administered over long periods of time where people go home with infusion packs, and they get it over several days. And some of them are given once a week or every two weeks. And so, it really depends on what type of tumor is being – what the bispecific it is being used for and which tumor is directed towards. 

Overall Health and CAR T-Cell Therapy | Tips for Preparation and Recovery

 

How can you best prepare to undergo CAR T-cell therapy to aid in optimal recovery? This animated explainer video provides key advice for learning about CAR T-cell therapy, consulting with your care team members, and tips for recuperating after the process. 

See More From Thrive CAR T-Cell Therapy

Related Resources:

Planning for CAR T-Cell Therapy | Advice for Myeloma Patients

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Current and Emerging CAR T-Cell Therapies for Myeloma

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

Transcript:

CAR T-cell therapy offers a groundbreaking approach for people living with myeloma, and taking steps to optimize your health can play a crucial role in your treatment journey. From preparing your body and mind before therapy to focusing on recovery afterward, there are actionable ways to support your overall well-being and, potentially, enhance outcomes. 

Here are some key steps to boosting your overall health when preparing to undergo CAR T-cell therapy: 

Start by learning about CAR T-cell therapy.

Take the time to understand how the treatment works and what to expect. Your care team can guide you through the process, from the collection of T cells to potential side effects and what to expect following therapy. Educational resources like those found on the Patient Empowerment Network website can also empower you with knowledge and confidence.  

Next, consider cost.

Confirm insurance coverage and make sure you understand the financial impact of CAR T-cell therapy. You can also meet with a financial counselor or a navigator at your medical center to see if there are any resources to assist with paying for therapy. 

Then, consult with your CAR T-cell therapy team.

When undergoing pre-treatment evaluation, be sure to get all of your questions answered and to understand what support will be available to you during the CAR T-cell therapy process.  

You should also build a support system.

Having a family member or friend who can accompany you to appointments and assist with your recovery is vital, and often required by the CAR T-cell therapy center. A care partner can be an advocate for you and help to ensure you feel supported throughout the process. 

It’s also important to plan ahead.

Coordinate with your employer for the time you’ll need to take off from work. And, if necessary, arrange for child or pet care so that you won’t have to worry about these logistics following treatment.  

And, last but not least, meet with other care team members:  

Consider a consultation with a nutritionist for advice on a diet that supports your body through the CAR T process, as well as safe handling tips for meals following treatment.  

A social worker can help you manage the emotional, logistical, and financial aspects of CAR T-cell therapy.   

And, meeting with a pharmacist may also be useful, as they can provide specific information about medications you will take before, during, and after treatment.  

After CAR T-cell therapy, maintaining your health is essential to boost recovery and to reduce potential side effects or complications. Here are some useful tips to aid in recovery: 

Focus on Nutrition.

Your body will need extra support as it heals. A balanced diet rich in vitamins and minerals can help boost your immune system.  

Stay Active.

Light exercise, such as walking or yoga, can help improve your strength and mental well-being. Consult with your doctor before starting any exercise routine.  

Monitor Your Mental Health.

Emotional health is just as important as physical health during recovery. Reach out for support if you’re feeling overwhelmed or anxious.  

Stay on Top of Follow-Up Appointments.

After therapy, your healthcare team will monitor your progress. Attend all follow-up appointments and keep track of your symptoms. If you notice anything unusual, contact your doctor immediately.  

CAR T-cell therapy is a powerful treatment and taking steps to prepare and care for yourself can make a significant difference in your recovery.

For more information and additional resources, visit powerfulpatients.org.

CAR T-Cell Therapy Support | Questions to Ask About the Process

What questions should patients ask when considering CAR T-cell therapy? Nurse practitioner Donna Catamero shares key advice for patients and care partners, available resources, and emphasizes the importance of financial and logistical assistance when accessing treatment.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero

See More From Thrive CAR T-Cell Therapy

Related Resources:

Planning for CAR T-Cell Therapy | Advice for Myeloma Patients

Planning for CAR T-Cell Therapy | Advice for Myeloma Patients

Current and Emerging CAR T-Cell Therapies for Myeloma

Current and Emerging CAR T-Cell Therapies for Myeloma

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

Transcript:

Katherine Banwell:

When meeting with someone considering CAR T-cell therapy, what are some questions that they should be asking about the process? 

Donna Catamero:

So, I think first, “Am I a candidate for CAR T?” Certain comorbidities may put patients at higher risk for complications, or they might need to have additional testing – lung and heart functions – but “Am I a good candidate?” 

“Do I have caregiver support?” Again, support network of caregivers for patients, because patients do need to have someone with them during that CAR T process, and “What are the resources available to me receiving CAR T?” Patients live far from CAR T centers. What kind of support that we can provide patients – is it hotel stays, is it transportation – to really get patients to their CAR T therapies? 

Katherine Banwell:

Right. There’s the whole financial aspect of therapy that some – it can be a difficult situation for some patients. 

Donna Catamero:

We’re very fortunate that both products have patient support services that help patients. They will provide hotel, transportation, food. 

So, we are trying to get more patients to the CAR T therapy. So, geographical constraints shouldn’t be a barrier, so we are really helping bridge patients to get to the CAR T centers.   

 So, to access some of these resources, talk to your healthcare team, social work, but also, again, I empower patients. Go directly to the manufacturer – Johnson & Johnson, Bristol Myers Squibb – you can go directly to their websites and find out more information, but your healthcare team can kind of, again, be a bridge to get patients that support.  

Being Empowered | The Importance of Understanding Myeloma

How can patients and care partners feel empowered when facing a myeloma diagnosis? Nurse practitioner Donna Catamero highlights the importance of education, shared decision-making, and a strong emotional support network, along with using trusted sources for reliable information. 

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

See More From Thrive CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy | Care and Monitoring Post-Treatment

CAR T-Cell Therapy | Care and Monitoring Post-Treatment

Current and Emerging CAR T-Cell Therapies for Myeloma

Current and Emerging CAR T-Cell Therapies for Myeloma

CAR T-Cell Therapy Support | Questions to Ask About the Process

CAR T-Cell Therapy Support | Questions to Ask About the Process

Transcript:

Katherine Banwell:

As a provider, how do you empower care partners and patients who have been diagnosed with myeloma? 

Donna Catamero:

So, education, education, education. Knowledge is power. Learn everything you can, attend your support groups, attend educational seminars, and be part of your decision making. So, we called that shared decision making. You’re part of the healthcare team. You need to tell your providers what your goals of therapy are, and in order to do that, you really need to educate yourself on what kind of therapies, what are the supportive care options, and be part of that discussion. 

Katherine Banwell:

And how does one educate themselves? Are there websites that you would recommend they go to? 

Donna Catamero:

There are several foundations and organizations that I find very useful for patients. Our instinct is to go to the Google machine and type in our thoughts, but we do have great foundations. The Multiple Myeloma Research Foundation, the International Myeloma Foundation, HealthTree – all great resources for patients. They provide education, educational seminars, support groups, mentors. There are hotlines where patients can call and get the information right at their fingertips, and this is really from reliable sources. 

Katherine Banwell:

How do you counsel patients on coping with the emotional side of myeloma? What advice and resources are available for them there? 

Donna Catamero:

So, it’s important to try to get yourself a good emotional support network, so your family, your friends, your fellow myeloma community can really provide support for patients, and really – when you get – I’m going to repeat that. When you get a devastating diagnosis, patients can tend to withdraw from family and friends, but family and friends – your support network – can really help patients get through very trying times, so, your caregivers, your family, your friends, and like I said, the myeloma community is here to help. 

Undergoing CAR T-Cell Therapy? Why Managing Overall Health Is Essential

Planning to undergo CAR T-cell therapy? Nurse practitioner Donna Catamero explains the importance of maintaining overall health before CAR T-cell therapy, staying organized during treatment, and how healthcare teams are improving the management and anticipation of side effects.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

See More From Thrive CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

Planning for CAR T-Cell Therapy | Advice for Myeloma Patients

Planning for CAR T-Cell Therapy | Advice for Myeloma Patients 

CAR T-Cell Therapy Support | Questions to Ask About the Process

CAR T-Cell Therapy Support | Questions to Ask About the Process

Transcript:

Katherine Banwell:

Wow, that’s great. Why is it so important for those undergoing CAR T-cell therapy to manage their overall health? 

Donna Catamero:

So, the healthier you go into a treatment, the better you’re going to feel, and this includes your activity level, so, really maintaining activity, getting out there, walking, exercising, eating things in moderation, having a healthier diet, and I just think the better you feel going into therapy, the better you’re going to tolerate therapies. 

Katherine Banwell:

Okay. Managing life before and after CAR T-cell therapy can be a really big undertaking. What tips do you have for staying organized at home, especially related to medication and follow-up appointments?  

Donna Catamero:

So, CAR T therapy can be very intense up front. There’s a lot of appointments, a lot of things you need to do to prepare yourself to get ready to collect your T cells and to receive your T cells, and it’s a lot of appointments, a lot of scheduling, and treatments to gear up for that cell infusion. So, what we do for our patients is getting calendars for patients, diaries for patients, to really keep them organized. It is a lot up front, but then, after a patient receives their T cells, they are then more on a maintenance phase, and life will get easier. It’s just heavy up front.  

Katherine Banwell:

Would you say that healthcare teams are getting better at managing and anticipating CAR T side effects? 

Donna Catamero:

Absolutely. So, we have several years of experience now. We can anticipate the timing of certain side effects, we manage them very well, many institutions are now doing CAR T therapies as an outpatient, so we really have gotten a great handle on how to manage these side effects, when to anticipate these side effects. And then, even long-term monitoring and managing patients several months post the CAR T infusion, infection prevention, etc., we have done quite well and been successful with our patient outcomes.   

Current and Emerging CAR T-Cell Therapies for Myeloma

What are the current and emerging CAR T-cell therapies for myeloma? Nurse practitioner Donna Catamero discusses approved CAR T-cell therapies for multiple myeloma, who they’re appropriate for, ongoing research to expand their use, and treatment options if the disease returns after CAR T-cell therapy.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

See More From Thrive CAR T-Cell Therapy

Related Resources:

Undergoing CAR T-Cell Therapy? Why Managing Overall Health Is Essential

Undergoing CAR T-Cell Therapy? Why Managing Overall Health Is Essential

Being Empowered | The Importance of Understanding Myeloma

CAR T-Cell Therapy Support | Questions to Ask About the Process

CAR T-Cell Therapy Support | Questions to Ask About the Process

Transcript:

Katherine Banwell:

Donna, welcome. Thank you so much for joining us. Would you please introduce yourself and tell us about your role at Mount Sinai? 

Donna Catamero:

Sure. I’m Donna Catamero, I’m a nurse practitioner, and I’m the associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. 

Katherine Banwell:

Would you tell us about the currently approved CAR T-cell therapies and which myeloma patients they may be right for?  

Donna Catamero:

So, currently, we have two products available for patients. The first is idecabtagene vicleucel (Abecma), and it’s approved for patients with relapsed/refractory disease who have received two prior lines of therapy, and this includes exposure to an immunomodulatory agent, so, your lenalidomide (Revlimid), your pomalidomide (Pomalyst), a proteasome inhibitor, and that includes Velcade/Kyprolis, and an anti-CD38 monoclonal antibody, so this is your daratumumab (Darzalex) or isatuximab-irfc (Sarclisa). 

The second product we have to offer patients is ciltacabtagene autoleucel (Carvykti), and this is approved for patients a little bit earlier on, so, also relapsed/refractory disease who have received at least one prior line of therapy, and it must have included proteasome inhibitor and an immunomodulatory agent, and they need to be refractory to Revlimid. So, what “refractory” means is they relapsed while taking the Revlimid.  

And both these therapies are important for patients, so if patients are inquiring about CAR T therapy, they should ask their providers what product is available for that. 

Katherine Banwell:

Let’s talk about research in CAR T-cell therapy. What new options are being studied, and how far along is the research? 

Donna Catamero:

So, we’re actually very excited. So, the two products, Abecma and Carvykti, we’re actually looking at them in newly diagnosed myeloma patients, and this is regardless of if patients are eligible for transplant or not, and we’re looking at comparing transplant versus CAR T therapies, so we’re hoping to move CAR T therapies for newly diagnosed – so, first-line therapy – so this is very exciting, and we’re also investigating new products with dual targets. 

So, right now, our two approved CAR Ts, they target BCMA, so now we’re looking at CAR Ts that are targeting BCMA and another target – so, GPRC5D or CD19 – so this means that the CAR T is grabbing onto more cells, so, in theory, it would have a higher cell kill.  

And then, we’re also investigating CAR Ts that we call off-the-shelf, so, autologous CAR Ts, so, donor CAR Ts, and this is actually exciting for patients who maybe can’t wait for manufacturing of their T cells, and now we can use donor T cells. So, these are earlier on studies, so we’re hoping within the next few years, more options will be available for patients.  

Katherine Banwell:

Yeah. What happens if the myeloma comes back after T-cell therapy? What are the treatment options available beyond CAR T? 

Donna Catamero:

Earlier on, we were hoping that CAR T would be our cure, but patients are getting very long, durable remissions from their CAR T therapy. We see patients who are five, seven, eight years out from their CAR T therapy, so patients do have a long time in remission, but the myeloma can come back. 

And what do we do with these patients? We actually have been very successful managing patients post a CAR T relapse, so we are looking at bispecific antibodies, which were recently approved over the past several years, and we see patients who have had relapses from their CAR T go back into a remission with these bispecific therapies, and again have long, durable remissions. So, we can absolutely manage patients if their myeloma comes back after CAR T therapy. 

Advice for Inquiring About Myeloma CAR T-Cell Therapy Clinical Trials

How can patients find CAR T-cell therapy clinical trials? Nurse practitioner Donna Catamero shares resources for identifying trials, such as ClinicalTrials.gov, and encourages patients to ask providers about available trials and eligibility.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

Related Resources:

Understanding Myeloma Therapy Targets BCMA and GPRC5D

Understanding Myeloma Therapy Targets BCMA and GPRC5D

How Is CAR T-Cell Therapy Research Advancing Myeloma Care?

How Is CAR T-Cell Therapy Research Advancing Myeloma Care?

How Can Myeloma Patients Access CAR T-Cell Therapy Clinical Trials?

How Can Myeloma Patients Access CAR T-Cell Therapy Clinical Trials?

Transcript:

Katherine Banwell:

How can patients find CAR T clinical trials that might be right for them? 

Donna Catamero:

So, ClinicalTrials.gov can point patients in the right direction. Again, the foundations – the Multiple Myeloma Research Foundation, the International Myeloma Foundation – can help direct patients toward clinical trials that might be right for them.  

Katherine Banwell:

How can patients start the conversation with their provider? What questions should they be asking about trials? 

Donna Catamero:

So, first, when you’re given options for treatment, you should always ask – always, always ask – “Am I eligible for a clinical trial?” 

All the therapies we have available today for patients initially came from clinical trials. In our early CAR T therapies, those patients had access to those drugs years before the general myeloma population, so clinical trials are key to really moving the therapies for tomorrow.  

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina discusses the importance of seeking third-party support for managing mental health issues and provides guidance on addressing sexual health concerns during myeloma treatment. 

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

Related Resources:

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

Myeloma Symptom Management | An Expert’s Approach

Myeloma Symptom Management | An Expert’s Approach

Transcript:

Katherine Banwell:

If a patient or a caregiver is having trouble managing the emotional side of myeloma, whether that be anxiety, depression, or other mental health issues, how do you encourage them to cope with those feelings?  

Daniel Verina:

I think it’s always good – multiple times I say they always should talk to a third party. So, either reach out to our social worker team who are phenomenal at helping support patients, but even reaching out to psychiatrists or psychologists and getting another perspective. It is good to have a friend. It’s good to have family to discuss and talk to, but sometimes, I think, sometimes having somebody so close may not have the best perspective.  

But so, getting a third opinion or a clear lens in discussion to help guide them is a great way to do it. I also advise caregivers because of the burden of the calendars and the different tasks they have to do, I tell – even with my patients, I tell them to journal. Journal their day. Be able to get out there their voice from their mind into a piece of paper to help clear the mind and give clarity to move on for their next steps. It is a challenge.  

Katherine Banwell:

And you’re saying that that psychological support for the caregiver is just as important.  

Daniel Verina:

Absolutely. It’s the patient who also has cancer so does the caregiver have cancer too. So, you’re treating two people, not just the person who you’re giving the therapy to.  

Katherine Banwell:

We were talking about supporting the care partner and the patient in terms of mental and physical well-being. There’s a sexual aspect to that as well, right? 

Daniel Verina:

Absolutely. I think sexuality or sexual health is extremely important. I think the fear, what I have seen in my personal experiences, and it depends on each. And each person, part of this chess game, has a different view. So, the patient is sometimes nervous because they don’t want to hurt their caregiver because they’re on chemotherapy. And then, the caregiver might feel that they’re not prepared because they don’t want to cause any injuries because they’re on chemotherapy, right? What are their counts? May I hurt them? Will I give them an infection? Things like those kinds of things.  

And sometimes in both directions that the patient may lose the libido, the desire, and it has nothing to do with the caregiver and their attraction, right? It’s a physical change that the therapies that we give may diminish some of this physicality. So, explaining that to the patient and their caregiver, but also giving them that support. Having them be able to talk to a social worker, having them being able to talk to a therapist and say, “This is what I’m experiencing. How do I cope with this?”   

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician

Empowering Myeloma Patients and Care Partners | Key Advice From a Clinician from Patient Empowerment Network on Vimeo.

Nurse practitioner Daniel Verina discusses strategies to empower care partners and myeloma patients, emphasizing the long-term nature of the journey and providing guidelines for returning to activity post-treatment.

Daniel Verina is a nurse practitioner at the Center of Excellence for Multiple Myeloma at Mount Sinai Tisch Cancer Center in New York City.

Related Resources:

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

Coping With Emotional & Sexual Health | Advice for Myeloma Patients and Care Partners

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

The Benefits of Shared Decision-Making for Myeloma Care

The Benefits of Shared Decision-Making for Myeloma Care

Transcript:

Katherine Banwell:

As a provider, Daniel, how do you empower care partners and their patients who have been diagnosed with myeloma?  

Daniel Verina:

I think with the cancer card or even myeloma, and I always say this, it’s truly a fact, I said it’s a journey. It’s a journey.  We are together. It’s the tortoise that wins the race, not the hare when it comes to myeloma. It’s very different because many patients may have an experience that a friend had a different type of cancer and their treatment ended in a year or two. So, and myeloma currently, it is a continuous type of treatment for many years.  

So, it’s getting them on board and understanding that there’s going to be wax and wanes in time. And we’re here for the long run together. I’ll ask questions continuously because every question is new to them. I might’ve heard the question 6 million times, but it’s their first time experiencing it and hearing it.  

Katherine Banwell:

Yeah. Well, and following treatment, how do you counsel patients who are returning to activity and exercise? Are there any guidelines they should follow?  

Daniel Verina:

Absolutely. I think it depends on how they feel, their physicality, depending on their age because myeloma really has now become a broad spectrum in age. Yes, it’s a more mature adult or older adult disease, but we’re seeing it happen in our patients in their 40s and their 50s. So, they want to return to activities. They say whatever they can tolerate. Making sure that they’re not doing heavy lifting because myeloma can affect the bone strength or cause fractures.

So, no power lifting or bungee jumping, I try to advise them not to do. But go back to what they enjoy the most. Bringing them back to close to what their normal living is, I think is one of the best ways that patients can tolerate it.